Sharing tips, stories and challenges with others, makes living with ichthyosis just a little bit easier. The FIRST to Know calls are a great way to “meet” other families and individuals. Each call is centered on a topic or subject, and lasts for one hour. You can decide which call is interesting to you and phone in. You can be an active participant, or call in and listen to what others are saying. All calls are held at 8:00 PM Eastern Time. Do you have an idea for a FIRST to Know topic? Contact Moureen Wenik, Executive Director, via email or by telephone at 1.800.545.3286.

The past FIRST to Know conference calls have been well received by our members. It is wonderful to have individuals talking to one another, sharing tips, and sharing stories and challenges. There have been requests from our membership to add disease-specific calls to the calendar. This is a great way to "meet" other families with the same ichthyosis type. Dates and topics have been designated for the next series of FIRST to Know conference calls. All calls are held in Eastern time. We now have the opportunity to participate in video calls. So you can either call in on your phone, or video call from your smart phone or a computer.

To participate in a call, simply click the link next to each call to register for that call. You will then receive an email with the call-in information.

Upcoming Calls

FIRST to Know

call dates will be posted when they are scheduled

Facebook Chat

chat dates will be posted when they are scheduled

Join in the chat on the FIRST Facebook Group pages! Members must be approved to be part of the page to participate.

Days and times will be posted on the page.

Tips on how to make the most of the FIRST to Know Call

Call from a quiet location.

Don't put your phone on hold if you have on-hold music or advertisements, as this will play back into the conference room.

February 15 Siblings of those affected with ichthyosis
February 22 PPK: Connecting families
March 1 Netherton syndrome
March 22 EI: Connecting families
April 19 IEP? 504? Making Sense of Your Child’s School Resources.
May 3 X-linked Ichthyosis: Connecting Families
May 17 Lamellar: Connecting Families
May 31 Going to college? How to Prepare for a Great Experience

2014

January 9 - Netherton syndrome: Meeting Each Other
January 23 - Ichthyosis 101 – Understanding More About This Rare Disorder
February 4 - What is Going On with Research?
February 20 - X-linked – Meeting Each Other
March 6 - School Resources: Getting Your Child Ready for School
March 20 - Lamellar: Meeting Each Other
April 3 - Keeping Cool: Overheating Tips
April 15 - EI: Meeting Each Other
May 18 - Vacation and Ichthyosis - Traveling and Managing Ichthyosis Away From Home
June 1 - PRP - Families Connecting Together
June 29 - Teens - What's Up?
July 13 - XLI - Families Connecting Together
July 27 - College 101 - What to Expect When You Get to Campus
August 10 - Harlequin - Families Connecting Together
September 21 - Lamellar: Families Connecting
October 12 - Darier disease: Connecting Families
October 26 - XLI: Connecting Families
November 9 - Harlequin: Connecting Families

2013

February 21 - Lamellar: Connecting Families Together
March 5 - Netherton syndrome: Connecting Families Together
March 26 - EI: Connecting Families Together
April 9 - X-linked: Connecting Families Together
April 25 - Teens Rock: An Open Dialogue for Teens, with Teens
May 7 - Aging Skin: How is Your Skin Changing?
May 22 - Darier Disease: Bringing a Community Together
June 6 - Vulgaris: Connecting with One Another
June 20 - Time for College: Transitioning from HS to College
July 10 - Infections: What Are They?
September 12 – Lamellar Families
September 24 – Laundry and Clothes Care
October 10 – EI Families
October 22 - Itch